Second kidney failure leaves Canadian woman 'mentally and physically drained'. What to know about 'life changing' donation

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Stepping forward to donate a kidney might seem daunting, but it can help someone reclaim control over their future. A 31-year-old Nova Scotian is casting a wide net looking for a match, after having to put her life on pause for the second time.

Ellie O'Brien was just 16 when she was diagnosed with kidney failure.

"It was a very out-of-the-blue diagnosis. I basically was just living my life, normally as a 16-year-old, and I ended up feeling super ill, really short of breath," she recounted. "All they had to do was take bloodwork, and they were like, 'Oh, you're in severe kidney failure,' and I was on dialysis that night."

She recalled her bloodwork was so bad she was told, "You should be dead right now."

For 14 months, O'Brien's routine revolved around gruelling hospital sessions, having to spend the entirety of Grade 11 going to school and then dialysis three days a week. "I feel like it really made me grow up fast — and it was extremely isolating as a 16-year-old," she recalled.

Doctors still don't know why her kidney failed. Prior to her diagnosis, she had been feeling ill for about six months, experiencing nausea and difficulty breathing.

A glimmer of hope emerged when a donor, her mother's close friend, stepped forward and offered O'Brien a kidney transplant in 2009, when she was 17.

This transplant carried her through the next 13 years, empowering her to pursue her passion for nursing. "It was mainly those dialysis nurses... they totally inspired me. I wouldn't be where I am today without that experience."

Second kidney failure 'mentally and physically draining'

Fate dealt her another blow when her transplanted kidney began to fail again in 2022. She knew it would happen eventually as kidney transplants generally only last about 15 to 20 years, and her bloodwork had been "off" for a while prior.

"The anticipation of your kidney failure and going back on dialysis is so painful, because you know all the freedoms that are going to be taken away from you," she said.

O'Brien has been off from work since November 2022. Now, she spends three hours a day, five days a week, at the hospital on dialysis until she can find a new kidney. She's stabilized now, but "for about six to nine months, I felt mentally and physically just absolutely drained every day."

She pointed out a transplant is a treatment, not a cure.

"You don't know what your future looks like — am I going to be attached to this machine for 10 years? How am I gonna advance my career, have a family, all the things that a normal woman wants to accomplish? It's just so uncertain right now."

O'Brien is now looking for a kidney again, but the process is more difficult this time around.

"Now that I've had a kidney transplant, I've also had a couple of blood transfusions. So when you receive tissues from another person, a solid organ or a blood transfusion, the recipient's body kind of creates these antibodies to the tissue of the other person," the nurse explained.

These antibodies are called donor-specific antibodies. It means a patient can be at high risk of their body rejecting a new organ if they receive a transplant from certain kidney donors.

"Because of my previous transplant, I have 99 per cent antibodies, which is extremely, extremely high. It just makes it very, very hard to find a donor."

Her goal now is to "cast a wide net" and hope someone comes forward. "It would be indescribable... just absolutely life changing, it's amazing," she said.

How does kidney donation work in Canada?

In Canada, the journey toward kidney donation is a multifaceted process with intricate steps aimed at matching donors with recipients.

According to the Canadian Blood Services, any adult who is in good health can be assessed to become a living kidney donor. They must complete a medical checkup to ensure they are healthy enough to donate.

The process of finding a donor spans several months to ensure compatibility and suitability for donation. Factors such as blood type, tissue compatibility, and overall health play a pivotal role in determining the viability of a potential match.

Once a person donates, their remaining kidney "starts to work harder, to make up for the removed kidney." The donor then has an annual check-up to make sure their remaining kidney is still working correctly. "Many people who have donated a kidney say that helping someone in need is a positive personal experience," the agency said.

There are two types of living donation in Canada:

1. Direct donation: When a potential donor knows a transplant candidate and is a match to that person

2. Non-directed anonymous donation: When a person offers to donate a kidney that could go to anyone they match who needs a kidney transplant

Within non-directed anonymous donations, Canada now has a Kidney Paired Donation program in which a person who wants to donate a kidney to a loved one, but isn't a match, can enter the program as a pair, and be paired with someone who is a match, in hopes their loved one would then be paired as well.

In O'Brien's case, she's eligible to receive a kidney from donors with blood types B and O.

She's encouraging people to consider becoming a donor, not just for her but anyone that's in need. Those who cannot donate, however, are encouraged to share her story and help her cast a wider net.

"I would never expect anything other than just supporting me and getting the word out as much as we can. And hopefully, find a match in this country somewhere, eventually."

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